A nurse’s advocacy alters the path of a patient with locked-in syndrome.

On a winter day several years ago, critical care nurse Katie L. George began her first of four day shifts in a row. Among her tasks was taking over the care of Ms. A., a young woman who had a traumatic head injury after being involved in a car accident. Ms. A. had been sedated for several days to allow for intracranial pressure monitoring; her fiancé had stayed in the room with her the entire time.

Katie L. George

At the start of George’s shift, Ms. A.’s physician decided to stop her sedation so she could undergo a neurologic exam. Within an hour, Ms. A. opened her eyes and her fiancé jumped up, grabbed her hand, and began talking to her. But the initial assessment George conducted yielded troubling findings: Ms. A. had no spontaneous movement and her heart rate didn’t elevate in response to noxious stimuli. She appeared, however, to be looking around the room and tracking George and her fiancé.

Ms. A.’s physicians repeated the assessment and arrived at the same conclusion. Magnetic resonance imaging revealed that she had sustained a severe C2 fracture in the car accident and that her spinal cord was nearly severed.

Ms. A.’s parents, who lived abroad, were en route to the hospital but wouldn’t arrive for another day. In the meantime, Ms. A.’s fiancé stayed by her side and quickly established a way to communicate with her. He would read her the title of an article from her favorite magazine, then tell her to blink once if she wanted him to read it to her or twice if she wasn’t interested.

“Throughout the day it became clear to us that she absolutely could understand what we were saying,” said George. Ms. A. was suffering from locked-in syndrome—a condition in which the patient is conscious and certain eye movements remain functional despite full body paralysis. When her parents finally made it to her bedside the following morning, they faced devastating news. The attending physician informed them that because of the severity of Ms. A.’s injuries, she was unlikely to regain movement of her extremities. She would always be dependent on a ventilator and she had a high risk of dying within a year from complications of immobility such as pneumonia.

Ms. A.’s parents were advised to take some time to think about how to move forward. The next day, they decided to have their daughter withdrawn from life support. Despite Ms. A.’s apparent cognizance, George said, “I think her family was trying to do what they thought was best. In their minds—and understandably so—they didn’t want to put her through this.”

But, according to George, Ms. A’s fiancé pushed back on his future in-laws’ decision. “This isn’t right—I think she’s in there, and this should be her call to make,” he said to George. George agreed, and scrambled for a solution: Ms. A. was due to be removed from life support that afternoon.

First, George discussed her concerns with the attending physician. He agreed with her, but emphasized that since there was no way to determine Ms. A.’s mental capacity from a legal standpoint, the decision of whether to continue life support remained with her family.

Despite the physician’s response, George was determined to find a way to help give Ms. A. a voice in deciding her own fate. So she reached out to a colleague in palliative care, who referred her to a speech pathologist. Over the phone, the pathologist confirmed that Ms. A.’s capacity could, in fact, be legally validated through the blinking of her eyes.

“At that point I went to the attending and the resident and said, ‘Here are the calls I’ve made; we can prove her capacity by doing this,’” said George. “They weren’t happy that I had persisted after they’d said no, but they were receptive.”

A plan was made for Ms. A.’s parents and fiancé to gather in her room along with her physicians, a chaplain, and George, her nurse. Once assembled, they explained her condition and prognosis to her, and reassured her that she wouldn’t be in any pain if she chose to discontinue life support. She was instructed to blink once if she wanted to continue life support and twice if she preferred not to. Everyone in the room let out a collective gasp at Ms. A.’s response: “She blinked once and opened her eyes so wide—it was very clear what she was telling us,” recalled George.

After that, the situation resolved uneventfully. Ms. A.’s parents supported her choice, and the decision to continue care was formally made. Eventually, she was transferred to a rehab facility in another state. It was the last George would see of her patient for a long time.

A few years later, George was at work when one of the attending physicians who had cared for Ms. A. called her over. The physician had come across a recent video of their former patient.

George watched the footage, in shock. Ms. A. had made enormous progress in her recovery: she was now able to move most of her extremities and no longer required a ventilator or a feeding tube. The footage showed her dressing herself, using various tools to help her perform basic tasks, and getting around in a motorized wheelchair. Her mental capacity was fine, and her fiancé was still by her side, now as her husband. “You did this,” the physician told George. “She’s alive because of you.”

Looking back on the situation, George said she never doubted that getting involved on behalf of her patient was the right thing to do, despite facing pushback from some of her colleagues. “This was something that was way too wrong not to stand up for. I was sick knowing what would take place that afternoon. It really made me feel like, ‘OK, this is what we have to do.’” Taking a stand was intimidating, she said, but her instinct reassured her. The experience exemplified what she called the gray area of nursing: being uncertain of one’s “moral role,” and wanting to tread carefully.

George says the experience of advocating for her patient and witnessing the rewarding results has kept her driven, both personally and professionally. “It’s given me the motivation to keep challenging things even when they’re tough, and in my day-to-day patient care, not to sit back if I feel something is truly wrong,” she said. “You can’t pick every battle, but you need to pick the ones that matter and stand up for what’s right.

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13 thoughts on “The Gray Area of Nursing: Being Uncertain of One’s “Moral Role.””

Quite a moving story. May we all find a team member like Ms. George to stand in our corner, someone willing to go that one step further and find a way to let our voice be heard even when we can’t speak.

What a wonderful story. So proud of Ms. George for refusing to submit to the intimidation and pursue the best for her pt. I know her heart was full of joy when she found out what a great outcome this lady had!